Gavin’s story: An epic battle against Joe Bully

Gavin is just one of the many brave kids that Children’s is proud to care for each year, and we couldn’t do it without your support. Your donation helps us provide Minnesota’s kids with some of the best medical care in the world. From surgeries big and small, to cancer care, to innovative pain management techniques, nobody treats kids like we do. Thank you for your support today, and helping kids just like Gavin. Scroll to the bottom to watch an interview with the Piersons.

If you’ve ever wanted to meet a superhero, look no further than Gavin Pierson.

For the past year and a half, Gavin has been in the fight of and for his life, taking on a brain tumor that he nicknamed Joe Bully.

In his latest battle, Gavin, 7, was the first person in the country with a mature teratoma to undergo Visualase MRI-guided surgery to incinerate his tumor. The surgery represented the most significant development in Gavin’s case. For the first time, his neurosurgeon, Dr. Joseph Petronio, discovered that Joe Bully had a weak spot. But the victory felt short lived. Gavin recently went home after spending about two weeks at Children’s for a blood clot in his brain unrelated to the surgery.

“Gavin’s nemesis is Joe Bully. He bravely goes into procedures, scans, and surgeries knowing it is part of the fight,” said his mom, Nicole Pierson. “Superheroes have to look fear in the face and overcome it despite the difficulties that arise. Gavin’s journey has not been without complications. Yet every time a new roadblock comes up, he knocks it down. He tells us every day, ‘I will never give up the fight, and I will win.’”

A villain is born

His epic battle began at a birthday party.

In a matter of just days, Gavin went from being a normal, healthy boy going to gymnastics and playing sports to struggling with double vision and having trouble looking directly at others. At his sister’s seventh birthday party, Gavin’s dad, Steve, asked his wife’s aunt, a pediatrician, to look at Gavin. Armed with a flashlight, she examined Gavin’s eyes. Seconds later, she suggested Steve and Nicole take their son to the emergency department at Children’s Hospitals and Clinics of Minnesota.

During the drive to Children’s, Nicole recalled that she and Steve were worried. They knew something was wrong with Gavin and feared he could go blind.

“I remember us saying, like literally looking at each other and saying, ‘Gavin loves this world so much and nature and science, and oh my gosh, what if he couldn’t see it.’”

Hours later, it would be Steve and Nicole who were blindsided.

Two physicians performed tracking tests on Gavin before order a CT scan. The family stayed in the emergency department following the tests. They were still there when a physician and surgeon returned to talk with Steve and Nicole. Steve could tell by the expressions on their faces that they didn’t have good news, he said.

“I kind of wish at that moment, it was like fast, and I was like can we just press pause because I’m not ready to hear what you have to say. Unfortunately you don’t get to press pause, and that’s the thing about illness,” Nicole said.

It appeared Gavin had a brain tumor about the size of a golf ball, the physicians said.

Steve didn’t hear past tumor. “It was still ringing in my head that they just said my son has a tumor in his brain,” he said.

The Pierson family

The saga continues

In addition to the tumor, Gavin had developed hydrocephalous – fluid on the brain. He needed immediate surgery to place an EVD to drain the fluid. Following surgery, Gavin was admitted into the pediatric intensive care unit (PICU), where he spent the next eight days while his parents, along with a team of specialists, determined a course of action.

A biopsy indicated Gavin had a mature teratoma, a benign tumor. But his alpha-fetoprotein level was heightened, a potential red flag for cancer. Gavin needed to undergo chemotherapy for five months.

During treatments, Gavin watched as many movies as he wanted, played games, watched The Dude in Star Studio. It was like a hotel for him, Nicole said.

“From the beginning, he wasn’t scared of anything. He just felt like, ‘Alright, well, they’re going to fix me, and I’m going to fight and big deal. Move on,” Nicole said. “He just seemed like it was nothing. It was just a breeze for him.”

A few months into treatment, an MRI showed the tumor had doubled its original size. At the same time, results from Gavin’s blood test showed there was no cancer in his body.

The cancer was gone, but the Piersons and Gavin’s doctors had a growing problem on their hands, his tumor. Because it was benign, neither chemotherapy nor radiation would obliterate it. Gavin needed surgery.

On June 21, 2012, Gavin underwent his first of three craniotomies in six weeks to reduce the tumor. Complications quickly followed. He developed a blood clot, then needed a Hickman and two shunts. It was one issue after another.

In November, Gavin had his fourth craniotomy. Dr. Petronio, his neurosurgeon, was making headway. The tumor was shrinking.

But Gavin couldn’t undergo craniotomies forever. His oncologist, Dr. Kris Ann Schultz, reached out to Pfizer about an experimental drug that had only been used in adults. She asked for compassionate use, allowing Gavin, the first child, to try it. Pfizer declined.

It wasn’t all bad news that month. During the summer, Gavin had developed agnosia, in which Gavin couldn’t process words he heard. His family learned sign language – about 200 signs – which Gavin picked up quickly and still remembers.

Nicole recalls the first day Gavin heard words again. She was at home, on family leave, with Gavin and his brother, Gage, and she was talking to Gage in the front room of their home. She told him to put on his shoes because they were going to the library. Gavin ran into the room, “Mom, I heard you say library,” he said.

Tears.

November and December were good months for the Pierson family. Gavin continued to recover from the fourth craniotomy. But around Christmas 2012, he started leaning to one side again. Nicole knew something was wrong. On Christmas Day, she called Dr. Petronio. Two days later, Gavin had an MRI, which showed the tumor had grown.

This is not Gavin’s fate

Gavin’s favorite hero is Batman. He doesn’t have a super power. His power is that he can do what no human can do. Gavin needed someone like Batman.

On Jan. 7, 2013, Dr. Petronio told Steve and Nicole that Gavin likely only had a few months to live. Craniotomies every few weeks and months weren’t going to cut it. They needed another weapon.

Nicole and Steve became desperate. Dr. Schultz contacted Pfizer again. Meanwhile, the Piersons reached out to local media and created a petition on Change.org, anything that might sway the drug company to grant Gavin use of the experimental drug, Palbociclib, which had only been used in clinical trials in adults.

“When the standard approach isn’t working, you have to work hard to find a better answer. There are new treatments being developed all the time and it’s our job to try to match those emerging technologies to the patients who will benefit from them,” Dr. Schultz said.

The day before Gavin’s fifth craniotomy, the company agreed to discuss Gavin’s case at their compassionate use meeting.

“As the parent, you are supposed to make things better…and you just look at how sweet he is and you just, you know, we just felt like, oh my gosh, we just can’t give up,” Nicole said. “This is not his fate, and we were willing to go anywhere at that point and do anything.”

So was Gavin’s care team.

Gavin underwent his fifth craniotomy. Unlike the previous ones, he didn’t bounce back quickly. He needed therapy. It was six weeks before he could walk again.

There had to be a better answer.

Be strong and brave

It came while Gavin recovered from the craniotomy. Pfizer agreed to compassionate use, and Dr. Petronio found a laser that could potentially help destroy the tumor. For the first time in a long time, the outlook was good.

Gavin has been taking Palbociclib since he was approved for it last winter, and it has helped stabilize the tumor. And, the MRI-guided laser surgery in October helped decrease the size of the tumor.

His parents have never given up in their fight for Gavin.

“We have to keep pushing forward because, I’m telling you, it has not been easy. I want it to be easier for other families,” Nicole said. “I don’t want another kid to have to have five craniotomies before we have a drug that works or before we have a laser.”

The surgery, guided by MRI images, allowed precise targeting and was minimally invasive. Two days after the surgery, Gavin was back home trick-or-treating with his brother and sister.

“He is so sweet to everyone he meets. He has never made an enemy. He is here for a higher purpose. He is going to do great things in his life,” Steve said. “I want to make sure he gets the chance to do that, and that’s why, I think, one of the big reasons we keep pushing because every kid deserves a chance.”

2 thoughts on “Gavin’s story: An epic battle against Joe Bully”

Hi there my name is Michelle Miller. I was very moved and motivated by your son’s story. He’s taught me now to never give up no matter what obstacles we may all face in life. He’s touched my heart in so many ways. He’s a wonderful kid and is very lucky to have very special parents like you. You guys are such an example that you will go above and beyond and fight and never stop fighting to get answers to help your son. Your son is so positive and outgoing that he just takes things that may suck and turns it around into something that dosent let it get to him. He just keeps battling away until he wins. Your son is a winner and will beat this. I’m praying for your family and son that Joe Bully goes away and never comes back.!I don’t have a Joe Bully in me, but have unending health problems myself.
I was born 3 months early due to my mom having pre-eclampsia. My mom was at Abbot Northwestern at that time. When I was born June 18th 1987 they rushed me to Children’s Hospitals and Clinics in Minneapolis to the NICU. My hometown is Swanville MN which is about 2hrs North of the Twin Cities. Doctors told my mom and dad I only had a 50/50 chance of survival. I spent 4 1/2 months in the NICU. Then had to come back on Christmas Eve the same year I was out of oxygen in my tank. Had a Tube placed in my stomach to feed me. I had a PDA which is a heart defect that they had to surgically close cause it was a hole. Had a procedure where they tightenend my diaphragm to keep things going up to my lungs. I also have Bronco Pulmonary Displaysia a lung disease from me being born early. Have a learning disability with anxiety and depression with ADD. Within the last 2 yrs doctors told me I have a hole in my heart kind of by the old one that was surgically closed. Had 5 different brain lesions on the right side of my brain. They found out I’ve been having mini strokes and had a blow to the main artery that made me really sick. I recently had sinus surgery like 3 months ago. Doing better with that. But now have to have nerve endings burned off in my neck so it helps me so I can move my neck better and not so tight. Some of this stuff I will have to live with the rest of my life. I even have a harder time fighting infections from me being born too early. But I’m 26 now, have my own place and a dog. I’m doing things that doctors never expected me to do. Like get past the 7th grade, to college I went and got my A.S. Degree In Young child education . Got my drivers liscense to drive a car. Living on my own, making some meals on my own etc. Sorry about the long story but I wanted to share it because Gavin gives me hope for the future. I’m so happy to hear from the video of you guys that he is doing ok and I hope he is still doing ok. Gavin you and your family are amazing people. Keep doing what your doing Gavin. You are a rock star and you can do anything you set out to do or accomplish. Just because we both have obstacles to overcome medically dosent mean we won’t be able to do things. Don’t let people or other kids talk down to you because you know who you are on the inside. That’s all that matters. Thankyou for sharing his story on this website Gavin your mom and dad are superheroes too they remind me of my mom and dad. Gavin keep going cause I know you can beat this Joe Bully 😉

I too have a daughter who has been battling brain tumors for going on 12 years. It has not been easy. Your sons story intrigues me. It is so uplifting to hear strong stories like your sons.y daughter will be starting the oral form of chemo called Afinitor. It we can just stabilize her tumors we have succeeded. We have used a few doctors who have performed four craniotomies over the past years. We have choosen to go to St Jude’s in October. We are determined with the Lords help to succeed. We will be praying for your sons cute.

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